Thursday, March 31, 2011

Eat this

So the last two days Rocco is eating Lunch. Like all of it. Plus a snack. He didn't eat as much dinner, but more overall throughout the day. He also pooped in his pants both days. He was doing really well, but I'm still positive that we are in the right BM direction.
So this has me wondering if Rocco is finally getting used to the meds and dealing with them, or has he started to build up a little immunity to them only after a month? I certainly don't want to up his meds every few months!!

Not having the answers is hard.

Monday, March 28, 2011

Delayed

I was trying to think of a way to describe the time since my last post and the best word I came up with was DELAY.

Delay my disappointment how medicine is working.
Delay my judgments of Rocco’s actions.
Delay changing his medicine so I feel like I gave these specific ones a shot.
Delay calling his doctor to talk about meds because I have nothing concrete to support change or not.
Delay what I think is the inevitable
Delay thinking about ADHD for one more stinking night!

So my confusion is still about the same. Are these meds helping to the best any medication can help? Does the good out way the bad? Here are some more comments from his teacher:

3/23/11: Rocco wasn’t answering questions appropriate to the circle time conversation. Kept talking about things not related and couldn’t get back on topic. 3/25/11: Very loud today, but very alert.

They started testing last week so I hope the teachers are starting to see some improvement. I still feel like if I were to read in-between the lines, I’d get, “Rocco seems much more annoying with these meds. He actually seems worse and less happy.”

At home there are more up and down moments:

Down: Rocco seems a little meaner or less patient. Rocco used to touch his sisters’ heads excessively, but never to harm them. It was just a compulsive behavior. Now I’ll catch him squeeze their arm when they won’t stop bugging him. They whine/cry and then he says, “You’re ok”, in a voice to calm them down; maybe because he doesn’t want to get caught in action. He still doesn’t hit, push, bite or kick, but it’s still new undesirable aggression. He also seems less interested in playing with his younger friends.

Up: He talks more about the future with his sisters. “When I get bigger, I’m going to drive my sisters to the park. A far away park.” I find him and Frankie laying/lounging with each other more too.

Down: I think he is down about 5 pounds in 2 months. After breakfast he eats nothing. Not one cracker, nothing until about 6pm for dinner.

Up: There is less of a struggle at dinner time. I still make him a lunch and offer snacks all afternoon, but I don’t let it bother me constantly. We’ll see what the doctor says.

Up: He seems to grasp some larger life things I try to explain. Like a few days ago he didn’t want to play with the neighbor kid through the fence so he just said, “I don’t want to play with you” and went inside. He seemed a little rude when saying it, so I talked with him inside about how that may have sounded mean to his friend. That it was ok to not want to play anymore, but maybe next time he could say something like, “I need a little break, so I’m going to go inside. We can play again another day”. So today I heard him say, “Rohin, I’m really hot so let’s go inside and take a break”. (He meant in the different houses sense they were only playing through the fence). It wasn’t really hot out, but I was proud that he was trying to take his friend’s feelings into consideration. I told Rocco that I thought that was a nice way to talk to his friend and I gave him a star.

Up: Rocco has had only one BM accident in the last 10 days. Did you hear me? Rocco is pooping in the potty and whipping his own bottom almost every day. Mini fireworks go off and people start dancing in joy. Up: More detailed play. So this is hard to explain. He seems to take his play further than before. For instance, instead of just putting on his Mario costume, he will now put it on, find the Mario music on youtube and actual run around like he’s straight out of the game. (Super fun to watch!)

Up or down?: Rocco is wanting some private time. If you have been in our lives for a long time, you know that I have prayed for the day that Rocco didn’t want constant attention, but I don’t know if I should be happy about this. He likes to take my phone and put his playlist on and dance in his room with the door closed. Or sometimes he takes his gameboy in his room and gets upset if his sisters want to come in. This is normal growing up stuff right and normal is good?

It still feels like I’m on a roller coaster. One minute I think wow these meds are helping and then the next second, I’m like nope, you’re just imagining the positive things and this bad comment/action proves it. There is my whine for the week. I need to schedule the next appointment with his doctor to check progress with meds this week and will have Rocco’s meeting with all his instructors next month.

So, delaying a little bit.

Thursday, March 17, 2011

Lucky

I had an appointment to have my almost 3 daughter tested for preschool and Rocco's current teacher was part of it. When I got there, she wanted to take a minute to talk about Rocco and the medicine. She said that it was hard to describe, but before the meds, Rocco seemed to not pay attention but was a very happy go lucky kid. Now he still seems in his own world, but much more serious. Things bother him much more and much more easily.

We talked more and settled on seeing if he has any progress academically and then address the behavioral things. So basically, if he improves his academic standings I then get the lucky choice of having a kid no one likes and able to handle school or having a happy fun kid that will be 8 before he starts 1st grade.

Ok a bit dramatic, but today has been long and I'm tired.

Tuesday, March 15, 2011

5150

Who's ready for the ravings of a lunatic? Honestly, I have felt a little crazy this past week. One minute, Rocco does something, totally new and I give the meds the credit, then he has a major meltdown and I blame the meds. And so on and so on.

The good:
Rocco learned how to whistle. He never really showed interest in that before. He asked how and I showed him. Then he kept trying and in about a 36 hour period he got it. He whistled! I'm more impressed that he was determined to do something then the actual whistle, but we celebrated the victory together.

FOUR Days! Rocco went four days straight without pooping in his pants! The Peds Behavioral Specialist said that the meds could help with his potty training because he'd be more aware of his body's cues to go. On Sunday, I didn't give Rocco the medicine and he pooped in his pants. I'm hoping to get back on track with his progress.

Spontaneous descriptions are more detailed lately. Now most kids respond, "I don't remember", when you ask them what they did at school. Probably not because they forgot, but rather they don't want to take the time to tell you. Today after I picked up Rocco, he said: "Mom, in Speech, Ms. Jamie asked where the girl in the box was and I showed her and I was right. And then she read me a story and said the girl was moving and then she asked me what the girl was going to do and I said move." Not only do I think his focus is improving, but he's understanding more that he in fact is doing a good job.

He seems more interested in academics, like singing the ABC's without someone asking him to.

When spending one-on-one time with Rocco playing video games, it feels more like I'm playing with an equal rather then a mom playing with her little boy. This probably doesn't make any sense, but that's the best way to describe his maturity growth.

Wow Renee, things seem great right?

The Bad:

I am running out of things Rocco will eat. If he seems a tiny speck of green (Oregano) on his cheese pizza, he won't eat it. He's really examining his food and will dismiss anything that looks off to him. I feed him breakfast before his meds so he seems to eat that ok. I do try to beef up that meal, because lunch is really bad. His teacher says snack is really hard too. I make him choose his lunch in hopes that will help him eat it. Pretty much all week he takes like two bites of lunch and then says he's just not hungry. Dinner, I'm pretty much a short order cook, but I'm choosing my battles right now. He still is only eating about 50% at dinner time.

Rocco seems to have less patience with younger friends. He does seem to be playing better with kids his own age, but doesn't let the little kids tackle him anymore. To explain, he used to let a couple 2 year olds chase and jump on him. If he would get annoyed, he'd calmly ask them to get off or call for my help. Now he starts to cry and get all worked up if that happens. Not because he is physically hurt, but I think he's having a harder time controlling those emotions. Or I seem to notice the girls crying more over Rocco losing his patience with them easier. He still doesn't physically hurt them, but his more aggressive demeanor is bothering them.

Remember when I told you the Psychologist said no more timeouts and just ignore bad behavior? Well that is really hard to do especially with your sweet boy develops a teen aged like attitude. "NOOOOOOOOOOOO, I'm NOT going to do that!!!!" "Control your emotions, Rocco", I respond. "STOPPPPP saying that! You keep saying that!!!!! STOP", shouts Rocco. I think I grew up with "Respect your Elders" mentality and don't want to teach Rocco that being rude is accepted. Or maybe the more honest reason is because I want to be more superior as the parent. I don't know, but last night he was having a pretty intense tantrum and I think I quietly said to my husband that this medicine is not going good and right this very little second in time I want to stop it!

Note from his teacher: "3/11 & 3/12, Rocco is excessively talking during circle time and not listening. When asked comprehensive questions he was unable to answer." He also didn't earn a stamp yesterday because he wouldn't stop saying, "I don't want to sit next to Julian during snack time!" They teacher would respond, "Rocco, right now we are reading in circle time, it's not time for snack yet." She didn't say, Ok Rocco you don't have to sit next to him, so Rocco kept saying it and being disruptive. I told her, he probably was doing this because I remember Rocco telling me that Julian threw up on the snack table when he was sitting next to him. She said, "Yes, but that was three weeks ago". Another sign that some compulsive behavior is developing and certain things seem very unreasonable in Rocco's mind, like sharing a drink with anyone. I think the next thing I'm going to say sounds paranoid. Rocco's teachers seem more annoyed with Rocco then ever before. I'm sure this is probably because I asked them to report changes in his behavior and watch him more closely, but so far I seem to only be hearing the negative changes. Also, I've read that some teachers don't understand ADHD and are often annoyed with bad behavior from students with it (I don't blame them). So far, I've been really lucky in the fact that everyone has always said they LOVE Rocco and think he is such a nice happy-go-lucky kid. His delays in development were forefront in our previous discussions and I'm a little afraid he is being less liked. (That's a mom thing I probably just need to get over.)

So do I sound nuts yet? I even said to a friend today, Why can't I get the positive from the medicine without the negative? Wouldn't life be grand with only positive things! Throw in the fact that you never really know if the changes are 100% do to meds and not the fact that he is growing up!!!!

So I'm still sticking with the meds right now. Rocco will be tested in the next coming weeks to see his readiness for kindergarten and I hoping for progress.

Up, down, high, low, happy, frustrated.

Saturday, March 5, 2011

Good day

Yesterday was a long, but good day.

I took Rocco to Vacaville for his appointment with a Pediatrician that specializes in behavioral studies. He was really great. He explained things to me in a non-condescending manner and was really good with Rocco. This was the first appointment I felt like the doctor was really spending time with my son instead of only going off what I say. And this is what I got out of that appointment:

1. He confirms the ADHD diagnosis. (A little relief here only because it helps with the decision to medicate)

2. He puts Rocco at about 25% delayed for his age. Because of this he actually recommends that Rocco start in a regular Kindergarten class and not a special day one (SDK). He feels that in a SDK Rocco will be the top of his class and won't be challenged enough. He used the analogy that if he played tennis with someone that is great at it, he is bound to improve his own game and vice versa. He suggests having him pulled out for speech and language though.

3. Doctor confirmed the 27mg is a really good dose for Rocco. Being the goal to calm his ADHD and not sedate him. Just 2nd day on the dose and Rocco wasn't showing any jittery signs like when he first started 18mg. He is eating a little less, but I'm hoping that is improved over the next couple of weeks. Rocco seems to sleep through the night as well.

4. I can stop the medicine whenever I want. So say I choose not to medicate on the weekends or over summer break. No need to ask doctor. I will however have to get a paper prescription every three months because it is a controlled substance. (People abuse to lose weight and get wired)

5. We talked about when Rocco will be ready to stop meds in the next coming years. This is what he suggests. Every school year about 2 weeks before Christmas break, stop his meds without telling his teacher. This gives the teacher a few months to get to know Rocco and if he still needs the meds the teacher will notice a big change in his behavior and let me know. If not, maybe Rocco has learned the life skills needed to manage his ADHD and a break from meds is appropriate. (I'm totally going to do this even though I think meds will be needed for many of his young school years)

6. Food: Doctor was actually pleased that Rocco was able to articulate that the reason he didn't want the pizza was because of the little black speck on it. Not to worry too much about it. Ok, I'll try not to worry about this except for the fact I'm running out of things to feed him. He can't live off eggo waffles.

7. Rocco stayed seated the whole appointment. Yes it was at a table with activities and coloring, but he never got up once. Even when the doctor and I were talking for some time. This is a big change. While sitting he also drew and pointed out all the features of his picture to the doctor and I.

Mario is number 0 and Luigi is number 1 and the have gold buttons on their clothes and Luigi is green and Mario is red and Luigi has a "L" on his hat and Mario has a "M" on his hat.

8. He gave me an accommodation sheet to review with his teachers each school year. He advised that it is law number 504 that requires teachers to make certain ADHD accommodations. REQUIRED people!!!!

9. He gave me medical journal information outlining a couple of non medicine things I could try that actual studies have been on to show some signs of improvement with ADHD. He highly recommends I stay on the medicine though.

10. He gave me the following recommendations for reading:

Book: ADHD - Complete and Authoritative Guide from the American Academy of Pediatrics (APP) at www.aap.org/bookstore

Online support: http://www.chadd.org/

He also gave me his direct email and phone number for any questions.

So all and all, I felt happy leaving that appointment. Yes people happy. I'm still scared and concern about Rocco and ADHD, but for two minutes I felt ok with it all. Is that horrible to say?

On a side note:
Social milestone... Day one of 27mg, Rocco played at the next-door-neighbors house for about 1 1/2 hours. When he got home he told me he was tired and his friend was really upset he went home. The kid said, "I don't want to be your friend anymore" just because he was leaving. We have had this problem before, but this is how Rocco handled it this time: He asked me to go over there and explain he is just really tired. He was persistent that I did that. Rocco was aware of his friend's feelings and was concerned about them. This is a big step in his social development and he would have never done this pre-meds.

Wednesday, March 2, 2011

Up

So the last few days have been a little blurry. Rocco seems to have adjusted to the meds ok. Meaning, the jittery and loss of appetite have gotten better, but ADHD symptoms have not improved but seem to have gotten worse. We saw Rocco's doctor today for his Kindergarten physical and his first ADHD medication check up. She has decided to up his dose from 18mg to 27mg per day. (Which does mean a new prescription of course). She said that sometimes a low dose can cause the hyperactivity to be worse. She also said that she is conservative when first prescribing ADHD meds and that this new dose is more appropriate for his size.

At first thought that makes sense, because Rocco is the size of an eight year old, but then I remember reading that these types of drugs are about the brain and weight doesn't play a part. So I'm confused. I have also read that 88% of Concerta users are at 27mg or higher. Soooooooooooooooooooooooooooooooo...

With yet another weary heart I'm going to try the new dose. Again, marathon not a sprint. One, and I mean ONE of the reasons I decided to try meds in the first place is the trial and error only stands to benefit Rocco in the long run. They'll either work, not work and lead us somewhere new, or the side effects won't be worth the benefits. At the very least I'm eliminating the "what if" with a short term risk. My research has shown that if a child doesn't respond to 3 different medications, then the ADHD diagnosis needs to be revisited. Yes a sad but true fact is that the Medical Industry is a statistics game. So I do also believe there is a change of misdiagnosis. I would want to know this sooner rather than later! I'm cautiously hopeful, but also anxious to have to see the jittery, none eating, ticking little boy again. It does break my heart, but Dr. says that those things should go away in about a week.

Do I sound like a the repeat button is stuck or what!?!
Fingers crossed. Still have the Behavioral Specialist Pediatrician appointment on Friday... we'll see what he has to say.